Adult SMA REACH: Development and Implementation of a Standardised Data Set and Data Collection Research Study in the UK Adult SMA Population
Status: Recruiting
Location: See all (18) locations...
Intervention Type: Drug
Study Type: Observational
SUMMARY
Adult SMA REACH is a data collection study aiming to gain a better understanding of the impact of standards of care and new treatments on the natural history of Spinal Muscular Atrophy (SMA). This study is sponsored by The Newcastle upon Tyne Hospitals NHS Foundation Trust. Adult SMA REACH is funded by Biogen and Roche. Currently, there are three drug treatments available for SMA in the UK: Zolgensma, Nusinersen and Risdiplam. Zolgensma is the only approved drug - Nusinersen and Risdiplam are currently available as part of Managed Access Agreements (MAA).
Eligibility
Participation Requirements
Sex: All
Minimum Age: 16
Healthy Volunteers: f
View:
• Age ≥16 years (when patients will begin the transition process to adulthood)
• Genetically confirmed diagnosis of 5q SMA
• Signed informed consent to take part in the study
Locations
Other Locations
United Kingdom
University Hospitals Birmingham NHS Foundation Trust
RECRUITING
Birmingham
North Bristol NHS Trust
RECRUITING
Bristol
Cambridge University Hospitals NHS Foundation Trust
RECRUITING
Cambridge
Cardiff and Vale University Health Board
RECRUITING
Cardiff
NHS Greater Glasgow and Clyde
RECRUITING
Glasgow
Bradford Teaching Hospitals NHS Foundation Trust
RECRUITING
Leeds
The Walton Centre NHS Foundation Trust
RECRUITING
Liverpool
King's College Hospital NHS Foundation Trust
RECRUITING
London
St George's University NHS Foundation Trust
RECRUITING
London
University College London Hospitals NHS Foundation Trust
RECRUITING
London
Newcastle-upon-Tyne Hospitals NHS Trust
RECRUITING
Newcastle Upon Tyne
Nottingham University Hospitals Trust
RECRUITING
Nottingham
The Robert Jones and Agnes Hunt Orthopaedic Hospital NHS Foundation Trust
RECRUITING
Oswestry
Oxford University Hospitals Trust
RECRUITING
Oxford
The Northern Care Alliance NHS Foundation Trust
RECRUITING
Salford
Sheffield Teaching Hospitals NHS Foundation Trust
RECRUITING
Sheffield
University Hospital Southampton NHS Foundation Trust
RECRUITING
Southampton
South West Wales Neuromuscular Service in Swansea
RECRUITING
Swansea
Contact Information
Primary
Adult SMA REACH Team
nuth.adultsmareach@nhs.net
+4401912418610
Time Frame
Start Date:2022-07-29
Estimated Completion Date:2027-04-30
Participants
Target number of participants:600
Treatments
Participants with Spinal Muscular Atrophy
Participants over 16 years old with a genetically confirmed diagnosis of 5q SMA.